Body Positive Book Reading Club

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

Fighting for Your Life: How to Survive a Life-Threatening Illness

By Jerome Wolfe
San Francisco: William Hamilton, 2001, $14.95

In 1985, I joined the Los Angeles Shanti Foundation, which provided emotional support for people with AIDS. As a volunteer, I had many clients for whom I provided one-on-one emotional support. I also facilitated support groups for people with AIDS and led groups for other volunteers.

Through Shanti I met many HIV-positive people. Their doctors had told them that nothing could be done for them, to come back when they were symptomatic. At that time, none of the AIDS organizations provided support services for these people. With no one to turn to, they were terrified and desperate.

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This situation bothered me a lot. I approached several AIDS organizations and urged them to extend their services to HIV-positive individuals. They were sympathetic but felt overburdened with the task of providing services for people with AIDS.

One night in August of 1987 I had a vivid dream of conducting weekend workshops for people who were HIV-positive. The dream detailed everything I needed to do. When I woke up, I knew I could make it a reality. Immediately, I enlisted the help of two friends, Kim Hartstein, a fellow Shanti volunteer, and Dr. Fred Wilkey, a psychologist. Two months later, we presented our first seminar, a three-day workshop that provided empowerment, emotional support and information. We called it "Positive Living for Us," or PLUS. PLUS was the first organization in the west to provide comprehensive services for people living with HIV.

After serving as Executive Director of PLUS from its inception to 1990, I decided to move to Monterey. At the end of 1990, the PLUS Board of Directors agreed to allow Shanti to take over the PLUS programs. PLUS has since been expanded to include seminars for women, African-Americans and Latinos (in Spanish). It has also been offered in many other cities, including Honolulu, Charlotte, Seattle, San Francisco, New York, Tucson and San Diego. I have continued to volunteer at PLUS seminars in San Francisco.

The advent of protease inhibitors and combination therapy in 1996 changed the face of HIV/AIDS. For most people, this disease has now become a manageable and treatable illness, much like diabetes. It is my conviction that PLUS was instrumental in saving the lives of hundreds of people who were able to prolong their lives until these effective therapies became available.

Yet, in the 14 years that the PLUS seminars have been available, only a few thousand people have been able to take advantage of the service. I realized that a book could condense everything in the PLUS seminars, that I could expand the scope to include all of the important factors that contribute to healing, and that this information could apply to all life-threatening illnesses.

The Purpose of This Book

This book was written to make you aware of the important decisions that you are making or will make regarding your health care. These decisions may involve the will to live, empowerment issues, dealing with emotions, the selection of health care providers, medical and alternative therapies, lifestyle and sexuality concerns, dealing with stress, finding support and exploring your spirituality. All of these areas affect your healing and survival. They all present many options for you. They all involve many decisions.

Don't expect this book to tell you what to do. This is not a "how-to" book. There is no single recipe for success, let alone a magic bullet. Everyone reacts differently to various treatments, therapies and healing modalities. I have found that those who consistently do best learn what their options are, pursue the best course of action, learn from trial and error and develop their own unique treatment strategy.

Under each of the above-mentioned topics I will discuss basic facts and their impact upon your health care. In the accompanying exercises I will ask you to explore the issues, options and decisions that are implicit in each of these topics. There are no right or wrong answers to the questions. Whatever answers, inspiration and empowerment you derive from this book will come from you, not from the book.

This is also not a passive or automatic "feel-good" book. It requires work -- hard work. Any good feelings will be a result of doing the work outlined in the book. This will require courage, honesty and perseverance. Changing habits, exploring emotions, finding out about yourself and becoming responsible are among the most difficult things you can ever do, but your well-being and your very life are worth the effort.

Even though the focus of this book is on healing and survival, it also involves quality-of-life issues. I believe that anyone who honestly and diligently deals with the issues presented in this book will ultimately gain in wisdom, peace and happiness. The powers of understanding, responsibility and commitment relate to every aspect of life. Whether or not they bring you a longer life, they will certainly provide a richer, fuller one.

Your Options

Health is determined by a myriad of factors, both external and internal, physical and psychological. These include the condition, functioning and interaction of the organs and systems of the body (the cardiovascular, lymphatic, nervous, digestive, immune, etc.) as well as infections by bacteria, viruses, parasites or fungi, deterioration of bodily functions, hereditary diseases, stress-induced illnesses and auto-immune disorders. Your health is likewise affected by how you interact with your environment and by your lifestyle: what you eat, drink and breathe, exposure to toxins, pollutants and radiation, rest and exercise.

When you are sick, your healing is often dependent on finding competent medical help and the best therapies and accessing help from other sources.

Your ability to do this can be affected by your emotional state, beliefs, habits and religious and cultural conditioning. For instance, being in a state of shock or denial may prevent you from seeking medical help. Having low self-esteem may make you feel unworthy of receiving or even asking for the best care. Believing that a faith healer, an alleged "cure-all" or God will heal you could result in your rejecting medical care. Believing that physicians are omniscient and infallible may prevent you from seeking other opinions, considering other options or asking important questions.

What you think and feel not only affects your ability to learn new options and make wise decisions but can directly influence bodily processes and thus play a significant role in the healing process. As O. Carl Simonton, M.D., medical director of the Cancer Counseling and Research Center in Dallas, Texas, and his psychotherapist wife, Stephanie Matthews-Simonton, write in Getting Well Again, "We believe that emotional and mental states play a significant role in susceptibility to disease, including cancer, and in recovery from all disease."

Excerpts

Morality and Self-Esteem

Self-esteem can be adversely affected by your moral or religious conditioning. Whenever your actions or desires are contrary to your moral code or religious beliefs you may feel guilty or ashamed. You may feel that somehow you have failed, that you deserve to be punished. You may believe you are bad because:

Your religion tells you so. The doctrine of original sin makes us sinners.

You do things that are morally wrong, such as masturbating, performing homosexual acts, having premarital sex or harboring sexual thoughts or fantasies.

Your parents told you so when you didn't obey them, get good grades, etc.

You don't meet the expectations of other people.

The result of believing such thoughts is that you inwardly feel that you are not good enough and that you don't deserve to succeed. Here are some of the consequences of this conditioning:

You lack motivation (you believe that you won't succeed or don't deserve to succeed).

You do not care for -- or take care of -- yourself, because you consider yourself unworthy and unlovable.

You engage in self-destructive behavior, such as: poor relationships (you believe they are all that you deserve or the best you can get), a job or career that is beneath your capacity (you allow others less qualified to take better positions, get raises or take advantage of you), or an addiction to drugs, alcohol, sex, overeating, gambling or other self-destructive forms of escapism.

If you have low self-esteem you can like yourself only under certain conditions.

Most of these conditions carry over from childhood. As a child, you may have disliked yourself for being fat, and as an adult nothing has changed. As a child, you may have felt unwanted and unloved, and as an adult you may consider yourself unworthy unless you are valued or loved by others. Your opinion of yourself may be dependent on the opinion of others, such as parents, friends, clergy or therapists. Pleasing others can become more important than acting in your own best interests.

Because your moods and attitudes affect your thoughts, low self-esteem constantly reinforces your poor self-image. Negative thinking about yourself creates depressed moods. These bad moods, in turn, result in negative thoughts about yourself, and a vicious cycle is set in motion.

Loving Yourself

Many teachers and psychologists, such as Louise Hay, Jerry Jampolsky and Ken Keyes, assert that the key to happiness, health and success is loving yourself. By having true self-esteem, by caring for and loving yourself, you create a powerful motivation to succeed. You create a genuine will to live. You create the desire to be strong and healthy. You create the need to be in control of your destiny. By believing that you can succeed and that you deserve to succeed, you set in motion the forces that create this reality for you.

Loving yourself does not mean that you are selfish. In fact, it means quite the opposite. People with low self-esteem want to please other people because they need the approval and respect of those people. They are acting out of their own emotional need, using others to fill a feeling of emptiness in themselves. Those full of self-love don't need the approval of others. Because their hearts are open and full of love, they are sensitive and compassionate toward those around them. Their kindness and caring for others are simply manifestations of their true natures.

When faced with a serious illness, loving yourself is essential for the healing process. In fact, low self-esteem is frequently part of the reason people get sick in the first place. Those who smoke, drink heavily, overeat, share needles or have unsafe sex when they know the risks, abuse their bodies, and get sick in large part because they don't care enough about themselves to adopt a healthy lifestyle. Their temporary "escape" from themselves is more valuable to them than their health.

Raising Your Self-Esteem

If you have a genuine desire to change, there are steps you can take to raise your self-esteem. . . These are some of the options available to you:

Be aware of the areas of your life where low self-esteem is a problem for you . . . Be aware of how it is affecting your ability to care for yourself.

Accept yourself the way you are, without blame or guilt . . . Have compassion and forgiveness for yourself.

Don't buy into the judgments or the beliefs of others. They have their own agendas and their own reasons for their opinions . . . Your own opinion of yourself is the only one that really matters.

Do what makes you feel good about yourself. Be aware of your actions and, instead of doing what simply feels good, do what makes you love and respect yourself . . .

As the false and negative beliefs about yourself fall away, cherish the authentic, positive beliefs about yourself. See yourself as a totally loving, lovable, worthwhile and deserving person. Read the books and listen to the tapes of such teachers as Louise Hay. Use affirmations, guided visualizations, mirror work or any other tools that will help you to form a positive image of yourself.

Start acting like you are good enough, as if you could succeed, as if you deserved to survive . . . Think about it. You deserve the good stuff. Even if your belief in yourself is only skin-deep at first, as you become successful in small things, your confidence and self-esteem will grow.

If you are a woman, a member of a racial minority or a homosexual, join a group or organization which can help you develop a sense of self-worth. Take a seminar or workshop that deals with self-esteem issues . . .

Get into some form of therapy. In addition to individual therapy, there is also group therapy, often with a specific focus or orientation (such as therapy groups for gay, black men). Hypnosis and rebirthing are two powerful methods (if guided by trained therapists) . . . Many service organizations can refer you to low-cost, sliding-scale or even free therapists, workshops or groups.

To sum up, low self-esteem has disastrous effects on the healing process. Those with low self-esteem are behaviorally handicapped when they most need to rally all their intellectual, emotional and physical resources. They inwardly feel that they are not worthy of getting well and that they lack the ability and will power to alter their prognosis.

But you can raise your self-esteem. By doing so, you will empower yourself and take charge off your life, which, in turn, will raise your self-esteem even higher. Indeed, self-esteem works in harmony with the other factors discussed in this book to create an upward spiral of healing.

A Commitment to Life

The will to live involves more than making a lukewarm choice between life and death. It requires a passionate love affair with life, an indomitable determination to survive -- to do whatever it takes to survive, including the effort and soul-searching to get through this book!

Without determination and initiative, the will to live doesn't mean anything. By determination, I don't mean doing what feels good. I mean doing what is often excruciatingly difficult, because doing what you need to do to survive is more important to you than anything else. It can mean getting people out of your life who are not supportive. It can mean firing your doctor. It can mean admitting that you are wrong. It can mean demanding that you get what you need.

There are many people in the healing professions and lots of self-help books that advocate doing what feels good and doing things the easiest and most comfortable way. In my opinion, this simply does not work. Thinking beautiful thoughts, listening to soothing tapes and reciting positive affirmations may make you feel good, but they are not going to heal you or change your life.

My mother died at 73 of cancer. She was a perfect patient. Her doctors and nurses really loved her. She never raised her voice, she always smiled, never asked questions, did everything that her doctors told her to do. For her, it was more important that people liked her than for her to assert herself and risk their displeasure. That was her choice. She was determined to be liked, but not determined to survive. When there are tough choices to be made, determination to survive requires that survival take precedence over everything else -- all of your fears, your desires, your conditioning. Everything.

This takes strong motivation. It doesn't matter what the source of that motivation is, whether it's the joy of being alive, finding a cure for cancer, killing the bastard who gave you AIDS or, hopefully, forgiving him. What is important is that the motivation to live be supremely important to you.

Death as an Advisor

In Carlos Castaneda's Journey to Ixtlan, Don Juan, a Yaqui Indian sorcerer, talks to Carlos about the inevitability of death and the uncertainty of life. He tells him that death can snatch us away at any moment. When Don Juan tries to get Carlos to "see" his own death, Carlos protests that dwelling on his own death would only bring fear and discomfort. Don Juan then admonishes him, "Death is the only wise advisor that we have."

For the man of knowledge, the spiritual seeker, death is a friend and ally. Knowing that death can take you at any moment can prompt you to live each moment to the fullest. There is no longer any time for pettiness, wasted effort or superficial relationships. There is no longer time for waiting for something to happen. You must make things happen. As Don Juan put it, "In a world where death is the hunter, my friend, there is no time for regrets or doubts. There is only time for decisions." Death staring you in the face should motivate you to drop your pretenses, your self-importance and your self-doubts, for these no longer serve you. There are only decisions to be made, only total involvement in the eternal "Now".

I've come full circle, back to what this book is really about: making decisions. In the Prologue I quoted from Richard Bach's Illusions: "There is no such thing as a problem without a gift for you in it." For someone with a life-threatening illness that gift can be making death your "advisor." With death as your advisor you can open the Pandora's box of hidden fears and emotions. Dealing with your greatest fear, the fear of death, can give you the strength to face every other emotion. By opening yourself to your worst fears, you open yourself to the possibility of peace, joy and love.

To have death as an advisor doesn't mean that you have overcome your fear of death. It only means that you have the courage to face this fear, a courage based on the realization that the path of wisdom is your best option. This is the way of the enlightened warrior: not charging blindly, unknowingly or fearlessly into battle, but armed with wisdom, marching forward and living life, however long it may last, as fully as possible.

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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